https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Sat, 25 Apr 2026 19:54:22 +0000 https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1557726 Wed, 09 Apr 2014 22:44:42 +0000 Kimberlybee 1557726@https://boards.hellobee.com/ <p>@lizzywiz: Hang in there mama! Hopefully the fresh spring air and summer rays will help with her respiratory issues. Keeping your LO in my thoughts and prayers. :heart: </p> <p>@Ms.Badger: It's so so so good to hear from you! I will be praying and cheering for L to be on a solid path for a super recovery and be stronger than ever. He is such a brave, super baby. :heart: </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1557722 Wed, 09 Apr 2014 22:43:01 +0000 Mrs. Pen 1557722@https://boards.hellobee.com/ <p>@Ms.Badger: oh my goodness I'm so happy to hear from you and soooo much happier to hear things are going so much better this time around. I'm sure the road to 100% recovery seems daunting - but your little man is so strong and I am inspired by your and his story. I hope your transition to going home goes smoothly! Thank you for keeping us updated. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1557679 Wed, 09 Apr 2014 22:07:32 +0000 Mrs. Twine 1557679@https://boards.hellobee.com/ <p>@lizzywiz: Sweet girl. Hope she has a long stretch of feeling better after this. I'm glad it's at least been manageable for you.<br /> @Ms.Badger: I've been thinking about you and Little Badger. I'm glad to hear that he's improving and that you'll be able to go home soon. It does sound like a lot to navigate, but if you get some nursing help at home I'm sure it will be so nice to be able to be in your own space again.<br /> @Mrs Green Grass: Did they give you any good ideas for the iron? Most of my family tends towards low iron, and cooking in cast iron seems to help at least a little. Obviously it's not a *solution*, but might give a little boost. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1557662 Wed, 09 Apr 2014 21:56:43 +0000 Mrs Green Grass 1557662@https://boards.hellobee.com/ <p>@Ms.Badger: That is fantastic news! I am so happy that his body likes his new liver. I hope you're home real soon :)</p> <p>@lizzywiz: I agree that some consecutive healthy time will make all the difference in the world! Hopefully since RSV and flu season are finally ending, you'll get a break.</p> <p>Things are good for now. We have our next high risk follow-up next week. I'm a little concerned with slow language development, but we still have some time...</p> <p>I also finally got Dylan's labs which I was dreading and we learned that he has ZERO iron...so we're working on that along with all of our other feeding issues. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1557504 Wed, 09 Apr 2014 19:59:38 +0000 Katrocap 1557504@https://boards.hellobee.com/ <p>@ms.badger: I've been thinking about you and your LO. I'm glad he is improving and able to play. I hope the sedation weaning goes well. It is such a scary time for you, I am impressed and inspired by your candor, bravery and optimism. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1557436 Wed, 09 Apr 2014 19:07:20 +0000 Trailmix 1557436@https://boards.hellobee.com/ <p>@Ms.Badger: You and your boy have been through the ringer, what a hard situation! Really really wishing and hoping that things continue on the upswing and will keep him in my thoughts! </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1557404 Wed, 09 Apr 2014 18:51:13 +0000 Mrs. Tiger 1557404@https://boards.hellobee.com/ <p>@lizzywiz: happy to hear things are normalized, sucks what you get used to though huh? I hope she can catch a break so she can heal and put this all behind her soon. thanks for the wishes for work, I am nervously looking forward to it. </p> <p>@Ms.Badger: so happy for LB &amp; you. I would think that the mesh/vacuum set up would be a lot to handle at home, I guess that's what the nursing support is mainly for? The kids always seem to do better at home, not to mention how awesome it is not to trek to the hospital all the time. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1557215 Wed, 09 Apr 2014 16:56:15 +0000 Ms.Badger 1557215@https://boards.hellobee.com/ <p>@Kimberlybee: @Mrs. Pen: @Pepper: @beaker: @cascademom: @Mrs Green Grass: @autumnlove: @rahlyrah: @lizzywiz: @Greentea: LB has been improving, he is still hospitalized but he no longer needs dialysis, he is extubated and breathing room air, the liver is functioning great with no signs of rejection, and is getting back to his old self playing with toys. He is closed for him which means he has bioactive mesh over his abdomin and a vacuum over that which will encourage his skin to grow over the wound, this was required because the liver is just too big for his tummy right now. He will have this set-up for 3 months to a year. Getting his tummy "normal" is going to take years while his body grows big enough. Now we are just waiting to wean the sedative he's been on since surgery and oral feeds, and then.... We should be able to go home! I'm thinking it will be at least a week and we have lots of complicated things to work out with home nursing, ot, out patient treatments, but he's working really hard to get healthy and home </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1556165 Wed, 09 Apr 2014 11:15:12 +0000 lizzywiz 1556165@https://boards.hellobee.com/ <p>@beaker: As stressful as work + sick baby is, I know, for me, that my work time helps decrease the stabs of frustration I sometimes feel in the day to day care-taking/mom role.<br /> I hope going back to work goes as smoothly as possible! </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1556151 Wed, 09 Apr 2014 11:12:15 +0000 Greentea 1556151@https://boards.hellobee.com/ <p>@Ms.Badger: :( I hope you and lo and your family are okay :( </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1556146 Wed, 09 Apr 2014 11:10:08 +0000 lizzywiz 1556146@https://boards.hellobee.com/ <p>@Greentea: @Mrs Green Grass: @Mrs. Twine: @Ms.Badger: @brownie: @beaker: </p> <p>I've been MIA, too, also due to LO's illnesses, but I am SO grateful that everything has been manageable with the basic (well, basics to mamas like us): brief hospital stays,iv fluids, oxygen, deep suctioning, steroids, epinephrine and Zofran (which is new to our arsenal, for vomiting). And we still have no reason to doubt LO won't eventually 'normalize'.<br /> I am home with her right now, which is why I have some Hellobee time. Rotavirus, on the heels of her second RSV this season. It has been brutal and she is SO skinny.<br /> She has had several respiratory 'attacks', I think 2 in the last 3 weeks, but they increased her dexamethasone which has decreased our need for epinephrine and that is awesome.</p> <p>There is still no explanation for her respiratory distress. No physical abnormalities and since it occurs in the upper airway it is not considered asthma. BUT, the attacks seem less intense and her oxygen levels don't go down quite as much as they used to.</p> <p>I really feel like if I could just get her well enough to heal completely that she would be less susceptible to ALL of the stuff, including her airway malfunction. </p> <p>Today, despite days of vomity-laundry and drama from missing work and her sunken lil' eyes, I am feeling really hopeful. Tomorrow I might be frustrated again, lol :-)</p> <p>@Ms.Badger: it's been two weeks. I hope so much that the news has all been good and your sweet guy is back from sedation. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1510521 Thu, 20 Mar 2014 20:46:45 +0000 Ra 1510521@https://boards.hellobee.com/ <p>@Ms.Badger: Thinking of you and baby badger! My heart breaks for you. I admire your bravery and positivity. :heart: </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1509286 Thu, 20 Mar 2014 16:01:42 +0000 autumnlove 1509286@https://boards.hellobee.com/ <p>@Ms.Badger: thinking of you and your sweet boy! </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1509193 Thu, 20 Mar 2014 15:38:49 +0000 Mrs Green Grass 1509193@https://boards.hellobee.com/ <p>@Ms.Badger: I'm so sorry! I'm glad that he is stable and moving in the right direction. I hope that this liver is the key. If you need any additional support, please ask! </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1509040 Thu, 20 Mar 2014 15:06:49 +0000 cascademom 1509040@https://boards.hellobee.com/ <p>@Ms.Badger: So many hugs. You and your family have all of my prayers. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1509024 Thu, 20 Mar 2014 15:05:08 +0000 Mrs. Tiger 1509024@https://boards.hellobee.com/ <p>@Ms.Badger: :( the only way through is through. Hope LB keeps getting stronger every day. You're the strongest/bravest momma that I know. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1507424 Thu, 20 Mar 2014 10:33:26 +0000 Pepper 1507424@https://boards.hellobee.com/ <p>@Ms.Badger: I'm so sorry things are so hard right now. I don't really know what to say, other than I'm thinking of you, and hoping he continues moving towards getting better. You guys deserve a break. &lt;3 </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1503232 Wed, 19 Mar 2014 00:37:03 +0000 Mrs. Pen 1503232@https://boards.hellobee.com/ <p>@Ms.Badger: oh honey... On one hand, so good to see you around! On the other, I am so, so sorry for all you've been through these last several months. I'm sure you're been told over and over how strong and brave you are. I can't offer much advice but I have been thinking of you, and I hope things improve! Please keep us updated! </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1503173 Tue, 18 Mar 2014 23:37:46 +0000 Kimberlybee 1503173@https://boards.hellobee.com/ <p>@Ms.Badger: oh I am so sorry and I have been very worried too. I sensed something was wrong because you were MIA. I feel deeply wounded to hear of this. Keeping you and baby in my thoughts and prayers! :heart: </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1503163 Tue, 18 Mar 2014 23:27:10 +0000 Ms.Badger 1503163@https://boards.hellobee.com/ <p>I have been MIA for awhile. Things got really bad. He completely rejected his donor liver and had to be retransplanted. The recovery from his second transplant has been very complicated. It's been nearly three weeks. He's still on the vent and heavily sedated so he won't rip the vent tube out. He is getting dialysis daily. He's tummy is still open with a piece of gortex covering his wound. Still no date on closing or what closing will look like for him. This liver is too big for him but they needed to make it work because it was immunologically a good match. His bile ducts are infected and hes still retaining a lot of fluid in his tummy. But, he's up to full feeds as of today and seems to be moving towards getting better. I am both hopeful and exhausted. We've now spent more than 3 full months in the hospital. I want my baby back but I'm scared of what he's going to be like when they finally wean the sedation, what if he's not my sweet, happy baby? </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1491902 Thu, 13 Mar 2014 13:18:55 +0000 Mrs Green Grass 1491902@https://boards.hellobee.com/ <p>@beaker: yes piling means puking! Haha. You "just" go all those places...yeah I think you're covered. :) re: bottles my ped would just always ask about it so I felt like I had to, but I don't think the timing really mattered because the drop would've happened at some point. I'm not overly concerned though. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1490543 Thu, 13 Mar 2014 01:40:57 +0000 Mrs. Tiger 1490543@https://boards.hellobee.com/ <p>@Mrs Green Grass: I've seen you post about D not gaining weight. I can only imagine how frustrating! Is there a particular reason they wanted him off the bottle (besides the whole everyone gets off at a year thing)? And does piling = puking? Of so, awesome! </p> <p>We're not followed by a high risk clinic, just the GI clinic (intestinal rehab team), surgery clinic, neurology, and his regular pediatrician. right now we go to GI clinic every week, although hopefully soon they'll start stretching it out more. We're also waiting for MD's Infants and Toddlers program to come assess him so we can get some (free!) OT and PT. </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1490410 Wed, 12 Mar 2014 22:00:21 +0000 Mrs Green Grass 1490410@https://boards.hellobee.com/ <p>That's exciting/scary that you're going back to work! I'm sure your MIL will be fine, but it sure is hard letting to of the control. I know I said this wherever you posted his pic, but he looks so good! Great progress.</p> <p>I recently learned that Dylan hasn't gained an ounce since Christmas. He's in the hardest age for weight gain (1-2 yrs), but I was really disappointed because we work so hard on feeding! He's doing really well all in all; we just never made up the volume after bottle weaning. But the piling is gone completely since we quit pediasure. So glad!</p> <p>We have out next high-risk follow up clinic visit in April. @beaker: will you've followed by a high-risk clinic? </p> https://boards.hellobee.com/topic/check-in-for-chronic-health-support#post-1490393 Wed, 12 Mar 2014 21:46:52 +0000 Mrs. Tiger 1490393@https://boards.hellobee.com/ <p>Just wanted a chance for us all to catch up, if anyone is up for it.</p> <p>DS2 has been doing mostly very well, gaining great weight and is finally on his non-adjusted curve. He has been sounding very congested lately, such that at last weeks GI appt they made him get a chest X-ray to rule out pneumonia (thankfully he was clear). I'm somewhat frustrated because until this point everyone was telling me the congested sound he gets is just from his inability to swallow effectively... Whereas it appears that this attending is treating it as an infection. I realize these options are not mutually exclusive. He's getting albuterol via a nebulizer now, supposed to be three times a day. I hope that it helps and that once he brings out all the junk from his chest he'll be fine. </p> <p>He's still getting IV fluids through his broviac line at night, and I asked at our appointment today when he'll be up to full feeds (ie when can we stop the IV) and the doc sort of laughed, and said "don't even think about it" :( I know that slow and steady wins the race but gosh, I just want this phase of his/my life to be over, with the weekly hours long appointments and blood draws. </p> <p>I also am now planning to go back to work part time in mid April, since we can't afford for me to stay at home longer, and need our health insurance (which is through my job). I am looking forward to the distraction and social interaction, but nervous and worried about how my MIL will be able to handle DS2, although I will try to consolidate the IV care for when I'm home. DS1 will start preschool while I'm at work so she only has one to deal with.</p> <p>Anyways that was a huge brain dump. How are you all doing? Any other bees out there who are dealing with long term health issues or special needs, please join in. I'll call out the ladies from the other thread, but no pressure to respond...<br /> @Greentea: @Mrs Green Grass: @Mrs. Twine: @Ms.Badger: @brownie: @lizzywiz: </p>